Want to know if it’s worth continuing the fight!? I’ve been concerned I have RA for past 3 yrs but GPs and one specialist say it’s ‘probably fibromyalgia’ (my symptoms don’t match fibro in my opinion)
(I’m 46, female, non smoker, non drinker, vegetarian, normal healthy weight, active as possible)
Symptoms are-
*History of Bronchiectasis, pneumonia, pleurisy, lung scarring, lung hyperinflation, Hib & Strep Pneumoniae infections and sepsis.
*Started with bad elbow stiffness and pain in right elbow, can’t straighten arm without pain (had 3 yrs now) can feel left elbow is very slowly getting achy too. Hands get stuck in ‘claw’ position after carrying shopping bags and elbow too painful to straighten.
*Non dominant (left) hand then developed pain stiffness and visably swollen knuckles, fingers noticeably ‘arthritic looking’ middle fingers really bend outwards towards little fingers, little fingers bend inwards.
*both knees and thighs got very stiff and painful, really struggle with stairs
*chronic unexplained anemia
*started with very painful hip and lower back (similar to sciatica)
*flu like symptoms upon waking (general feeling of malaise) takes 2/3 hrs to feel ok
*very very stiff after waking up
*stiffness never goes, sitting makes it worse, legs ‘get stuck’ (super stiff and numb) if I sit cross legged or sit too long.
*chronic tiredness and depression
*blood tests show no RF, X-ray and ultra sound on hand show ‘nothing’ 🤷🏼♂️
Thank you so much for reading 🙏🏼☺️
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CandiR
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Hi it does seem Yiu have not been treated correctly
I'd
Stand firm
I'd say deffenetly not fibromyalgia
CouLd be RA
Or something else
Lots get a diagnosis of RA if bloods are normal
But lots ra specialist do not and are stubborn
No sure if you can see a different doc or not
I'd also maybe put in writeing you want your
Diagnosis in writing from them and take it from there, also It has went on long enough, Maybe even 2 complaints to pal for the hospital and one to the docs
Thanks so much for your reply Osteo! That’s very kind and helpful (very interesting that you seem to feel the way I do re the Fibro diagnosis!) Very encouraging. Much appreciated thank you!! 🙏🏼☺️
You can have sero negative inflammatory arthritis. So RF is normal.All the joint symptoms sound like arthritis of some description rather than fibromyalgia. I think some are diagnosed with both either way you can't go on like that and need help so you're going to have to fight on.
I have RA and fibro and fibro tends to be muscular and RA joint based. You can be zero negative so not showing in the bloods does not mean you don’t have inflammatory/ra etc.
I would call NRAS and see ways of tackling this.
I call fibro the bitchy sister of RA and I do find that yes fatigue is in both but can now know the difference.
My first rheumatologist tried to diagnose me with fibro. he got a formal complaint against him for that one! He hadn't taken me though the diagnostic criteria properly and I showed that I didn't meet the criteria.
Next rheumy diagnosed me with psoriatic arthritis. Blood tests with that are often normal. and the pain can be caused by enthesitis which is where the tendons attach to the bone, rather than inside the joint itself. I kept saying to medics and physios, but what about this pain here, pointing to outside the joint. They kept saying, 'don't know what that is'. It was really frustrating!
But don't forget Hickam's dictum: patients can have as many diseases as they damn well please. You could have more than one thing going on here, but at least one thing does sound like a rheumatologist should be taking you more seriously.
You didn't say what specialist you saw, but if you can't get your GP to refer to rheumatology, make a complaint to the practice manager. If that doesn't work, call PALS for advice.
Hello. I keep meaning to unfollow this group because I am no longer under the RA/ inflammatory arthritis banner but turned out it was Systemic Sclerosis/ Scleroderma all along. My symptoms were v similar to yours when started 13 years ago but was only tested for RA not the many others. Rheumatoid factor was midly positive but can be in other conditions, same with my high CRP and ESR. Yes was bilateral but so are others such as Sjogren’s, Scleroderma - both of which I now have formally diagnosed, although the Sjogren’s is classed now as secondary to the systemic sclerosis. It took 12 years and private consultation with world expert in scleroderma centre of excellence last year to get fully diagnosed locally. Luckily I have a lovely rheumatologist who had started me on treatments, mycophenolate, iloprost and now, Rituximab. Never been diagnosed with Fibro but think I’ve just been lucky with rheumies on that one.
I’m not saying that you have same because, by now you’d almost certainly be reporting Raynauds as a major symptom - also severe reflux and GI issues. It’s got the worst outlook (highest mortality) of any rheumatic autoimmune disease so hope not for your sake of course. But could well be Sjogren’s which often presents as RA/ inflammatory arthritis and swollen hands and is often misdiagnosed as Fibromyalgia. Claw hands is a typical scleroderma thing so you’d need to rule out overlap syndromes with ANA and mixed connective tissue disease/ MCTD or if not, UCTD (undifferentiated but usually positive ANA). Also psoriatic arthritis / PsA. Personally I’d want all of these excluded properly before Fibromyalgia was presumed. Best of luck 🤞🏻😊
Ps adding newly published BSR guidelines just in case they are helpful to you or others because overlap syndromes and puffy swollen hands, arthralgias and inflammatory arthritis with clawing hands are all mentioned in the diagnostic criteria. academic.oup.com/rheumatolo...
Perhaps it would be a good idea to seek a second opinion and request a scan (with injection, as the X-rays came back clear for me).
I’ve been diagnosed with both Seronegative Inflammatory Arthritis and Fibromyalgia. Fibromyalgia was briefly mentioned during my first visit with the rheumatologist but wasn’t brought up again until about 1.5 years later. For my diagnosis, they performed a body scan with injections (I can’t recall the exact name, but they scan you initially, then inject you, and scan again). It took quite some time to get the arthritis under control, but I’m now on biologics, which have significantly improved my joint pain and reduced swelling in my fingers.
One thing my rheumatology nurse found puzzling was why I still experience stiffness (although it’s not as severe), particularly when sitting for extended periods. More notably, I tend to feel fine upon waking and during the early part of the day, but my symptoms progressively worsen as the day goes on. Apparently, this is unusual for arthritis, where stiffness is usually worse in the morning.
Since May, I’ve experienced three particularly difficult months with constant fatigue, brain fog (which are the most challenging symptoms), and becoming immobile after minimal activity (such as changing the cat litter, cleaning a cupboard, or even taking a shower). This led to my fibromyalgia diagnosis, which was confirmed by both my rheumatologist and a GP (not my usual one, but a very supportive temporary cover). I’ve been referred to a fibromyalgia clinic, and my first appointment is scheduled for next month.
The hardest part is not knowing whether my symptoms are due to the arthritis, fibromyalgia, or a combination of both.
I’ve been told it’s not unusual for these conditions to coexist. For me limiting stress (had to step down from my leadership role, reduce my hours, pace myself, and having a good diet free of ultra processed foods, including carbs and sugars helped a lot). I still have flares, but not they tend to last half a day to about 3, and are about 95% self inflicted by over doing it, physically or mentally (before they would last weeks, my longest being 14 weeks). I can’t help this, as I have little support, have an elderly mother to help take care of and no partner. So bills and keeping a roof over my head falls on me.
They are a medication used to treat autoimmune diseases, used not only for many forms of inflammatory arthritis, but also Chrohn’s & Ulcerative Colitis and others. They target and block specific proteins called Tumor necrosis factor (TNFs). In the UK, you have to fail on two conventional DMARDs, before you are considered for biologics (I failed on Hydroxichlorquine & Methotrexate). I’m on a biosimilar to Humira (much cheaper than brand name Humira, but still expensive enough to require special funding in order for it to be prescribed). For me it has been life changing. I have a colleague with Ankylosing Spondylitis who wouldn’t be able to get out of bed without these meds. I self inject once every two weeks. There are risks, mostly more prone to illnesses as it dampens your immune system, to stop it attacking your body. But for me and many the benefits far outweigh risk and the hospital monitors us closely taking bloods every 3 months.
Well thank you, my rheumy doesnt believecI have pmr anymore and am in process of tapering to 3 1/2 mgs, started at 40 oct 2016, tapered to 4 mgs dec 2022 but haf gca symptons put me back to 40’mgs then, since jan of this year several issues, tears glutes hamstring, labral around hip joint, started to taper to 4 mgs in April of this year, then groin pain and more, then severe arthritis im hip, and hands, all joints painful on waking, am going to ask GP or rheumy about biologics, and whatvDMARD please
DMARDs stands for disease-modifying antirheumatic drugs. - they are synthetic forms of immunosuppressant - from my understanding these drugs suppress all the immune system, and biologics are more targeted. . However, I’m not a doctor, just what my Rhemy team have passed on, and my own research when I was diagnosed and the doctors started me on these meds. The side effects of the DMARDs were too much for me.
Hi. I’m sorry you are having all these issues & not being taken seriously. I went through similar many years ago when the only Rheumatologist at our local hospital sent me away 3 times over a 9 year period saying nothing wrong. This was because he was ignorant & my RF was negative. I went privately to see a Rheumatologist in a different area & was diagnosed with sero negative inflammatory arthritis either RA or Psoriatic Arthritis. I would ask for another opinion with a different GP & a referral to a different Rheumatologist. You could go privately but it’s usually more than one appointment needed so not cheap. NRAS may have some suggestions as others have said. Don’t give up till you have answers.
Some of these systemic autoimmune diseases are very rare and some take longer to evolve and show themselves than others. It took me 12 years from onset to get the right diagnosis
This is just how it is with rare diseases I’m afraid. There are too few specialists and only one or two UK centres of excellence, if any. Also these diseases can evolve slowly and initially present like more common conditions such as RA and Fibromyalgia, IBS, Raynauds (primary), Sicca syndrome etc. Far from ideal of course but if you had a rare condition you’d be in same cave woman boat as the rest of us rare disease people. It’s really not a matter of choice for most of us or even for our doctors. It’s a question of us doing our own research and having to be very, very patient, but also extremely persistent.
Just to add to the mix of confusion. There r so many ‘conditions’ out there. I have had asthma most of my life then RA from aged 30. I am 72 now. Few years ago my son was getting high liver readings and was diagnosed with Alpha1 Antitrypsen deficiency. Of course I carried the gene from my Mum but who knew then🤷♀️. Upon research that causes no end of other problems too. I am now getting a diagnosis of Bronchiecstasis…the gift that keeps on giving.
Hi I have sero negative inflammatory arthritis and (likely )fibromyalgia (according to rheumy nurse). I had really high inflammation markers was very anaemic and still my GP refused to accept I had an inflammatory process (even though haematology suggested ). I had two joint replacements before I was diagnosed-so much for getting speedy treatment to stop your joints breaking down ! One consultant thought I could have psoriatic arthritis as my dad had psoriasis. I had 3rd joint replacement two years ago. The nurse also thinks I have fibromyalgia but when I look at symptoms they do overlap. Good luck and don’t give up if you don’t feel something is right. I did have a lot of Prednisone nothing else worked initially. As others have said some autoimmune diseases are harder to diagnose and it’s not always clear cut. I hope you get some answers xx
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